One man explains what it's like to live with multiple sclerosis

In 2006, Rob Denholm, 36, was diagnosed with Multiple Sclerosis (MS) - a neurological condition, caused when your immune system isn't working properly. Symptoms are complex, varied, often debilitating, and can range from balance problems to difficulties swallowing.

Here, Rob explains his bumpy road to diagnosis and how he stays positive – even on days he finds it difficult to button up his shirt:

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"In 2002 somebody drove in to the back of my car and I had the usual whiplash, but I also experienced tingling in my hands. I put it down to the car accident and didn't really think about it too much. Not long after, I was out with friends on fireworks night and my thumb and index finger went numb, but the feeling came and went.

"When symptoms started to increase in 2005, I put the strange sensations down to the car accident – as I had back and neck pain. I went to see a private health doctor, who did an MRI scan, but he told me that I was making it up and it was all in my head - that I was in a vicious cycle of worrying.

"I was healthy at the time and played football and badminton, but towards October, I had numb patches in my legs and was struggling with coordination, especially when I was trying to pick things up. I went to see a doctor again, but I got a dismissive waft of his hands. He suggested I went on a £5000 course of human focus. I remember the letter he sent to my GP, which said that I worry about pain, then I worry about it more and it leads to more worry.

I went to see a doctor again, but I got a dismissive waft of his hands. He suggested I went on a £5000 course of human focus.

"I put off seeing more doctors. But after a trip to the US where I kept dropping things, couldn't get going and was always tired, I went to see a doctor. He told me I had peripheral neuropathy and that I had to seek medical help when I returned to the UK.

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"In the UK, a GP told me to go to A&E, but I was told I'd got a slipped disc and was given diazepam. At this point, I was struggling to hold my head up. I couldn't hold my knife and fork to eat Christmas dinner. I'd already given up driving. As things got worse, on January 12th 2006, I went back to A&E and they did further tests, another MRI and a spinal tap."

Finally getting somewhere

"You have to have two clinical relapses before you're diagnosed with MS. I was eventually diagnosed with transverse myelitis (a neurological condition in which the spinal cord is inflamed). In 75% of cases transverse myelitis goes on to be MS. I sat there with a plate of NHS bangers and mash thinking about my possible diagnosis, and my worries were subsequently confirmed. But once you're diagnosed, you can start to see the woods through the trees. It was nice not to be guilty of fooling myself.

"Initially, had a fantastic doctor. He didn't just speak at you – it was a conversation – and that was vital. At the time, the nurse support was outstanding. It was very much a patient orientated team."

A 'normal' day

"A normal day can fluctuate quite a lot. Fatigue is an overwhelming symptom on a daily basis. Friends ask 'do you want to do this tonight?' and I just have to think how much I've done in the day and whether it's a good idea. You have to really plan for things. If I'm going to have a night out, then I'll know I need to take it easier during the day – otherwise I'll be done by 7pm!

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"My friends have been brilliant. I deal with a lot of the condition through humour. I'm a fully qualified teacher, but I came out of full-time primary school teaching role in August. And since I knew that was going to be the case, finding work has been challenging. I don't think it's because I'm disabled, though, as it's a difficult job market. I've signed up to supply agencies, but it's hard to plan. It's made me think perhaps I should do a job that requires more sitting down.

On a bad day

"On a bad day, you kind of know it's going to happen. I've woken up before now and I've had altered vision in my right eye. This will have an impact on fatigue, and then this has a knock-on effect. I generally tend to have issues all the time in my legs - be it pins and needles, crawling, tingling or whatever or pain. I'm clumsy with my hands. As the day draws to a close, if I'm having a bad day then unbuttoning my shirt will be difficult.

"I can't trust myself to do a lot of DIY and decorating. I can't use a sander, because the vibrations from it would drive my hands insane. Luckily enough, my wife has adapted to everything.

"I've got friends who play weekly football. I could probably do some of it, but I'd pay for it later. That's how it was with the supply teaching. At the time, I thought, this is okay and the next day I was gone.

As the day draws to a close, if I'm having a bad day then unbuttoning my shirt will be difficult.

"I go to the gym to manage symptoms. My fatigue is managed with exercise. When I gave up teaching, I thought, well okay, I'm going to be doing some kind of work, I need to make sure my energy levels are what they should be.

"I had my first lot of chemotherapy in 2007 and another in 2014, with the idea to suppress the immune system. It worked initially for a few years after the first time. I rejected the second because of the side effects. It brought back my asthma and numerous chest infections. There will be side effect dangers with many of the medications, and you have to think is it worth it. Back in 2006, when I was having multiple relapses, I thought it really was – that was the trade off."

Seeking support

"In my experience, the level of support has gone downhill. When I was first diagnosed, it was great, and there was a great relationship between nurses and doctors. There's a marked difference now. I don't have regular access or conversations with nurse. You had to book appointments well in advance, whereas previously it would be within 24 hours. I haven't seen an MS nurse in two years.

"In the absence of having access to specialist nursing or neurologist, call one of the charity – MS UK, MS trust or MS society – helplines. That would be the only place I'd go to in the absence of a healthcare professional. They're outstanding. Just to being able to talk to someone helps. They might not be a medical professional, but they understand the condition and can talk to you."

If you're being diagnosed…

"Arm yourself with information from reputable sources. Go to a charity website. Look after your own self. Accept and manage what you do and how much you exercise. You have no control over parts of the condition, so control what you can. Even if that's just what you eat and drink – take the little victories. There's no point in saying 'woe is me.' You have it, so you have to deal with it."

The materials in this web site are in no way intended to replace the professional medical care, advice, diagnosis or treatment of a doctor. The web site does not have answers to all problems. Answers to specific problems may not apply to everyone. If you notice medical symptoms or feel ill, you should consult your doctor - for further information see our Terms and conditions.

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